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7 years ago today I became a member of this elite club

Seven years baby.

This was the day I got wheeled into an empty surgery theatre for a lung biopsy, complete with a pathologist in the room (it was a Saturday and they opened it up for me - aren't I special ) and a couple hours later I was one diagnosis richer. Ha ha.

Despite the nature of the diagnosis, which bought me this elite club membership, it was much much better knowing the beast that needs to be tamed than not knowing what's wrong and having medical pros roll their eyes at your/my incessant requests for help.

At the time I had no idea how drastically this would change my life. Your initial feeling is that it's a change for the worse, but in fact it has become a change for the better. Totally counter intuitive, but true. I have said this before and I'm going to say it again. I have gotten way more from this disease than it has gotten from me. I could sit here and list off all the positive, wonderful things I have gotten from it, but I won't bore you with my Pollyanna perspective. You can all acquire your own and remember to enjoy every single moment of peace and no pain that you get. (There's one of the benefits from the disease, perspective we never had before getting sick.)

This forum saved my life, physically and emotionally and I have so much gratitude for Andrew for starting it, and all of the participants on here for their support, knowledge, wisdom, kindness, non-judgement, and empathy. Together we are invincible. Never forget the power we hold in us just from having gone through this experience.

I am so glad you are here with us on your anniversary. Our journeys would have been a whole lot tougher without each other. I'm glad you are doing well and hope you continue to gain ground against this unpredictable disease. We all feel stronger together, thanks to Andrew. Please take care of yourself!

Jana

Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!

I'm so glad we have each other. I know that this site is like a dear old friend. When life gets in the way and you don't have time to stop by for a coffee and a 'hello' nobody will judge you or stop being your friend. You come here when you either need help or feel like sharing some advice, and getting/giving some support (depending on the number of spoons you have that day.) I love knowing that it's here, and that all of you are there behind your keyboards, knowing exactly how I'm feeling on any given day because without a doubt, you've been there at some point.

I like what you said Michelle, "I don't think I could go back." I totally agree!!! I loved my life before, but I feel like I'm a better person because of this disease (weaker physically, but much stronger in the brain,) and going back would mean loosing all the priceless lessons from the last seven years, and they truly have been priceless. I also couldn't imagine giving back all the amazing friendships I've acquired because of this experience. We all have PhD's in WG, just go and talk to a regular doctor about Wegener's and see how much more you know about it than them, ha ha ha. I love knowing more than my doc about a medical condition. I also kinda dig being published in a medical journal about WG, knowing that this is something that most GP's will not experience. Ha ha (that's a little ego talking.)

"Together we are invincible. Never forget the power we hold in us just from having gone through this experience."

Great quote Marta! I totally agree that this disease has given me so much, some bits are tricky to handle but I know personally I am a changed man (for the better I hope!) in how I percieve Life, its true value and meaning.

Never waste a moment, life is precious, do what you can when you can, if you are able then do it!! and SMILE!!!!

'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.

Leigh, I understand your point of view. Some of us have more severe issues with WG, have had it disrupt our lives more than others, and some have died from its complications. I feel it has brought me many new friendships and educated me along the way, but I have never been in grave danger or extreme pain as some others have. I would at least like to go back to when I first could have been dxed but wasn't, 2.5 years before I was, and been dxed then so as to avoid some of the damage done to various parts of my body. Anyway, I don't blame you for feeling as you do, and am glad to see you on here once in awhile.

'Tis disease has done nothing positive for me by any stretch of the imagination. When someone asks me what age I would return to if I could it would be 25 because that was around the time I was healthy. I hate wegeners and all it brings.

I with you. I get mad when people are like things happen for a reason and this will make you stronger. There has been NO good reason or outcome from my wegeners. And it hasn't made me stronger. I'm weaker and honestly exhausted and personally don't handle pain well at all anymore. I would go back to before wegeners too! I hate it everyday of the week too but I do find that being positive and optimistic helps me heal. I'm in the middle of a relapse now and it sucks. Of course when it gets bad and I can't breath and I'm coughing up blood positive is the last thing on my mind but in general positivity I believe speeds recovery. Good luck to you, hang in there and live it up when you get those good days!

Re: 7 years ago today I became a member of this elite club

I believe its a balance for me, the worst thing is the affects, pains, problems and operations are levelled out by the person its turning me into. I used to work all hours and neglect my family and friends. The best thing its done for me is value life its self and the people i love and i cant put a price on that.
I would go back as far as i could to right the wrongs, but in fear of losing what i have now not a chance... i am stronger, i have more love, however the body amazing as it is... is rubbish and broken. Cherish every moment and the people that love you!!!!!

Sent from my SM-G930F using Tapatalk

Ben

Diagnosed in 2013

Never, never, never give up! (Winston Churchill)

What screws us up the most in life is the picture in our head of how it is supposed to be.... (Not found out yet)